Anne Cooney, LSW, MSW, is a social worker for the ALS Association Greater Philadelphia Chapter.

She has spent the past 5 years working as a member of the advocacy group, 4 of which have seen her lead the care services department. She currently carries a caseload of approximately 150 ALS patients in 2 different locations; the Jefferson ALS Clinic and the VA Medical Center in Philadelphia.

In this video, she’ll take viewers through the journey of an ALS patient. She meets patients on the day that they’re diagnosed, and accompanies them as they encounter their inevitable obstacles.

Cooney: I typically meet a patient the day that they’re diagnosed. They come down to the ALS Clinic at Jefferson. They come for their diagnostic visit, which is basically they’re either “ruled in” or “ruled out” as having ALS. If they do rule in, we generally meet with them and register the patient with our chapter. When I say register, by signing up with us, they’ll be allowed to receive a lot of the supportive services that we provide as a chapter. It can be a really difficult day – diagnostic day – when they receive the news that they do have ALS and some people are very upset, and it’s hard for them to hear those words, and then hard to sit down with us and learn about our chapter. Some people kind of just want to meet you, take your information and go, which is fine. They need time to process everything. Others seem to take it a little bit better, and they really do want to sit down with us and hear about what we have to offer, so you’re never quite sure what you’re going to get. Some people leave, and don’t want to meet with us at all. It’s fine; we’ll usually follow up with them later on.

We start with them from the very beginning, and then we follow them all the way through their journey with ALS. The average life expectancy is 2-5 years. I’ve had patients who have it for a year and then patients who have had it for 10-12 years. It just depends. You can’t get really close with every single patient that you have because we do have so many, but certainly there are those that I do get real tight with, and I form a bond with them, and you just really care a lot about them. It’s wonderful, but it’s hard, too. As time goes on, we can see the progression of the disease and the toll that it’s taking on the patient and their family members. It’s hard to watch them go through that.

I love what I do. I feel like, I don’t know, people are always like ‘How do you work for ALS?” but I love it. It’s a privilege to go on this journey with them. Almost every single patient I have met has been so grateful and so appreciative. We’re there to support them through the whole process. We provide services to them. We provide in-home care services. We provide equipment for them to use in the home. We provide accessibility services, like stair glides and ramping. We offer support groups. We get them connected to community resources in their counties. We connect them with social security to get them in with social security with disability. If they’re a veteran, we get them connected into the VA system so they can get all of the supports provided to them through the VA, which is huge. The VA does so much for their patients.

So, with all that work, we do all of that, but the other pieces, we council and support them through this journey. It is so upsetting for someone who gets this diagnosis, and as the disease progresses, they’re almost mourning the things that they lose along the way. Especially, I’m not saying everybody, but many of our younger parents are married, they’re working, they have young children, and now this happens to them. We walk through that process of having to let go of things and give up things because they physically can’t do it anymore. It’s really hard. It’s hard for their families to see the changes. It’s hard for the children to see their mom or dad not be able to do things anymore, so we support them through that whole process.

It’s hard to say everything that we do, because it’s so much, and I just do it because it’s just what I do. It’s just a journey – a journey is the best word for it. It’s a loss of things over time, a mourning and grieving begins before the person even passes away, because they lose so much along the way. We do our very best to help them, and try to make things easier for them, or as easy as possible for them, and just be there for them in every sense of the word.
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